Resistance Is Futile

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The aftermath of my mum’s death has proved to be a period of sorrow, reflection and contemplation. A lot of sadness yes, but interspersed with moments of joy and gratitude especially to the many people who got in touch to express their sympathy. I’ve also become acutely aware of my own mortality and latch on to any stories involving illness, particularly cancer, and especially if it’s a terminal situation. Yesterday, I read about Lynda Bellingham, the effervescent actress who has written about facing up to terminal cancer. She described herself as a liver and lover of life. This resonated with me. It paints a picture of someone who cares about living their life to the full, wresting every last drop from the experience.

So I thought: what does it mean to live life to the full? Does it mean having many and varied experiences, travelling the world, seeing the sights, sampling different cultures, speaking different languages? Does it mean being successful in your work, gaining promotions and being recognised as an expert? Is it about having a successful marriage, having children or a successful social life, a wide circle of friends? Or is it about being creative: writing poetry, painting, playing a musical instrument, singing and dancing? Or is it about being kind and charitable? Does it mean being politically active, seeking to change and influence the way the world conducts its business? Or does it involves meditation, prayer and contemplation? Is it about having money in the bank and nice possessions? Does it mean having a comfortable home, a retreat , a space to call one’s own? Is it about peace of mind? Is it about embracing culture? Or having a passionate interest in sport? Is it about eating well, exercising adequately and taking care of your body? Is it about the pusuit of knowledge and understanding?

The answer is that there are as many answers as there are people. To use my favourite legal phrase: it all depends on facts and circumstances. Context is everything and it changes.

Resistance to change creates suffering. In my case, I realise that I cause myself physical suffering by fighting to do the things I used to take for granted and emotional suffering by believing my imagination about the things I ought to be doing. Specifically, I believe that in order to live my life to the full I ought to be living in a certain way. After all, I see my contemporaries doing this: going to work, raising their children, having nights out and holidays and various activities from the list above and I want this too. This longing causes anguish. All the more so because I did not choose my change of circumstances. I did not ask for this illness and I would like it removed, with immediate effect.

But hold on, isn’t it possible for me to live my life to the full in a different way, taking account of my illness rather than resenting its presence? After all, I was never going to be Prime Minister, Pope or a pop star anyway. Can I find a way to have a variety of enriching experiences, and enrich other peoples’ lives, within the context of my existence? In other words, can I reframe my life from one of loss, longing and suffering to one of fullness? If so, what, realistically, would that look like?

I think it begins with acceptance of my limitations. Toni Bernhard writes about this so beautifully in her book ‘How To Be Sick’ and I recommend a read of this for anyone trying to manage a serious illness. It’s about bringing peace to your heart, mind and soul. From there, to consciously direct my attention on what I do have and what I can do and the achievements I can make, not some mythical perfectionist ideal. Thence to listen to, and act upon, my instincts, being kind and compassionate with myself.

So, this might mean that a full life for me in any given day involves learning about the day’s events by watching tv, engaging in a social life by having a visitor or exchanging tweets, being creative by writing this blog or (on a good day) standing for long enough to make soup. Or counselling my children from a prone position. Or offering a listening ear and gentle advice. Or watching the changing seasons from my window: like an ever-changing triptych painting. Or reading and dozing, allowing my body to rest. Or taking pleasure in seeing, reading about and hearing the exploits of my friends. Or simply being: having time in peaceful solitude, untroubled by external pressures. Or being grateful for the many and varied ways in which goodness and kindness express themselves in my life.

This doesn’t mean that a corner of my soul doesn’t long to be outside gadding about with gay abandon; only that the thought doesn’t prevent me living my life, with all its limitations and debilities, to the fullest extent.

What does living life to the full look like to you?

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Relationships and ME

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Relationships are a fundamental part of the human condition. Indeed, it is impossible to be healthy and grow as a person without positive interaction with others. Just think of the importance of nurturing relationships with infants. By and large, they are a two way street; each with its unique characteristics. I’ve had cause recently to dwell upon the importance of relationships in promoting recovery.

I had a visit from a friend I hadn’t seen for over 20 years. It was a surprise. The visit was lovely, full of intelligent, interesting conversation. A prize beyond rubies. I felt buoyed and looking forward to the next occasion. It hasn’t happened. I have realised that, with notable exceptions, this is a familiar story. I am left with a sense that I am less of a person than I had been pre-illness. An object of pity, an afterthought, a duty, a good intention never fulfilled.

So, a message to anyone who might be thinking along these lines. I’m the same person I ever was. I just need to behave in a fashion to which you are unaccustomed. I am acutely aware that your relationship with me needs to be much more of a one-way street as my limitations are severe. I would much rather that it was not. I also know that you are exceptionally busy and I have no wish to be the cause of any sorrow for you or rejection for me. That is why I don’t initiate contact.

Without successful relationships though, it is so much harder to recover. ME is a hard mistress: unconditional support, encouragement and love help, they really do. I am hugely grateful for those who offer this, many of whom are in the same boat as me and expend exceptional amounts of their available resources to do so.

If you’re reading this and you know someone with a dreadful illness, pick up the phone, send a text or email or letter. Let them know that they matter; that they haven’t been forgotten about and that you are interested in them, regardless of their debilities. You will do more good that you can ever possibly know.

Gratitude

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Red Arrows over Paradise

I’ve just weathered a perfect storm of circumstances that culminated in the most serious relapse I’ve endured since developing this illness 8 years ago. In common with many people, I feel drawn to writing about how awful it was: describing the sensations, feelings and thoughts, worries and fears in the hope that by so doing it will add to a collective body of first-hand evidence that will spur the scientific and medical worlds into action. But I’ve decided not to. I suspect my prose is liable to fall into cliche lessening the impact on any casual reader.

Instead, let me express my gratitude towards the people who were with me when this relapse was raging and threatening to overwhelm me. My sister who sat with me, distressed. My new GP who offered compassion. Twitter buddies who offered many kind thoughts and prayers. Old friends who phoned, texted or visited or whose visits I needed to postpone. My children who have become reluctant housekeepers. My priest who offered solace. And many more.

Let me also pay homage to the small marvels of our world from which variously I found succour. To the clouds I watched bloom and chase across the sky. To the hills, steadfast in their assurance. To food and drink. To formulaic tv programmes. To books in small doses. To social media, my other window on the world.To meditation and relaxation audios. To having a loo that is only 7 steps away!

Mostly, I’m grateful that the worst has passed. I am in respectful awe of those for whom such respite never comes.

Ten Top Tips To Try

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I’ve heard the process of recovery compared to the progress of the first rocket to the moon which was only on track for 2% of the time. 98% of the time it was making adjustments. Those adjustments are how we look after ourselves.

The incomparable Toni Bernhard, whose writing you can read here, suggested that we ask ourselves a deceptively simple question: What can I do best now to care for myself? I’ve asked myself that question repeatedly, especially when I know I’m veering off a healthy path. One such time was last night and here are the ten thoughts that came immediately to mind:

1. Limit screen time. I’m such a hypocrite, forever lecturing my children about the perils of such while doing the same myself. It’s not difficult to understand why this is. Particularly when I’m exhausted, my brain screams at me to be entertained and stimulated. Television, Twitter, blogs etc. provide this instantly no matter how flat you need to lie in bed. This creates further exhaustion, boredom and, on occasion, distress.
2. Persist with this blog. It’s both a creative outlet and a method of charting my thoughts and progress that I can look back on. I also hope it’s of use to other folk who might be in a similar position.
3. Keep additional commitments/activities to a minimum and have days where there are none. Under-estimate my capabilities. This week I had visits on three consecutive days, each hugely enjoyable but took a cumulative toll.
4. Ingrain extended daily relaxation practices. These sessions have multiple benefits and, as I’ve said before, are the key tools in my self-repair kit.
5. Stop fretting about events outwith my control. Specifically, the fact that my house refuses to sell.
6. Continue juicing vegetables. I’ve been making a concoction consisting of spinach, celery, cucumber, green apple, lime and ginger. It’s a bit of an acquired taste but I know the concentrated micronutrient content will aid my recovery.
7. Don’t allow myself to become overwhelmed and consumed by the behaviour/reactions of other people. I need to target my energy for healing.
8. Simplify life in every way possible. Have shopping delivered, children help with household tasks, accept that good enough is, well, good enough.
9. Try some gentle stretching. My body can’t cope with much physical activity yet but keeping mobile is important too.
10. Get to sleep at a reasonable hour. Sleep a long, soft sleep and wake refreshed.

I daresay that list will be different the next time I ask myself the question. What would you list right now as the key elements that allow you to live a more comfortable life and/or promote recovery?

Resilience

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In the past week alone I’ve had a fair smattering of life’s slings and arrows. I can’t go into much detail as they involve other peoples’ business but suffice to say that a couple were notice of serious ongoing issues, a couple involved poor behaviour on the part of folk, one or two were reminders of just how ill I am, and another was quite amusing.

If I’m honest I think that these events would have taxed the capabilities of someone who was fully fit. When, however, you are ill finding the resilience to deal with what feels like a tsunami of problems, irritations and slights is hard. Particularly with this kind of illness which interprets problems as an attack and ramps up my already dysfunctional nervous system to deal with them.

This creates an unhealthy cycle. Horrid event——-> worry/concern/debate/self-doubt——–> physical reaction: symptoms are increased, functionality decreased——-> anticipation of the next awful incident——–> greater sensitivity and decreased ability to withstand the next horrid event. When, as happened this week, there are more than a few of these in a short space, with little recovery time in between, my health suffers badly.

Resilience is a key component of good health. Upsetting events happen all the time; they are a normal part of life. How can I build the necessary resilience when I feel fragile?

Ideally, it would be good to get off the world for a bit! Given that this isn’t likely to happen, what else can I do?

• Firstly, be as kind to myself as possible. Recognise that it is ok to feel bad when bad things happen.
• Try to minimise the age-old patterns of worry, self-recrimination and doubt. Make a decision and let the situation rest. Don’t use precious energy going over and over the events.
• Rest properly using mindfulness and relaxation techniques to give my body the space and time it needs to do its healing work.
• Simplify life as much as possible; take the easiest routes where the harder would be the automatic response.
• Be open, curious and non-judgemental about horrid events; by assigning them a level of horridness I’m building in a level of reaction which, at a physical level, will translate into a huge over-reaction. Tone it all down.
• Look for help and support.
• Concentrate energy on the good stuff that is also happening. Find something to make me smile or laugh.

In other words, there is much about my external environment I cannot change so I need to adapt my internal environment to allow me to withstand life’s knocks without them, in turn, making me more ill. It is a tough and ongoing process but absolutely vital to the recovery of my strength and wellbeing.

What Am I For?

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The sad passing of Tony Benn today caused me to pause and ponder upon my beliefs and values. Shaped by my Catholic faith and upbringing and honed by my life experiences what do I believe? Here is what sprung to mind from my heart:

I am FOR:

1. I believe that each human being, born or unborn, is unique and of equal value.
2. Fairness, justice and freedom.
3. Protection of the vulnerable.
4. Fair distribution of the planet’s resources.
5. Compassion, kindness and community.

I am AGAINST

1. Abortion without compelling reasons.
2. Old boy networks, ruling families, secret societies and other forms of unmeritorious advancement.
3. Abuse of power, prevalent in such measures as the bedroom tax, welfare reform and NHS dismantlement.
4. Nuclear weapons, and indeed weapons generally.
5. Selfishness, venality and the vacuous culture of acquisitiveness and worship of celebrity.

Perhaps you might spend a moment or two today pondering upon what is important to you too?